There is way more to me than just a life with Cystic Fibrosis, but its a huge part of my life, it affects everything i can do! Somedays i hate CF others i just get on with it! This is my life, my story, the way i deal with CF and the way it affects me! So read with an open mind, don't judge me or feel sorry for me! i'm stronger than you think and i'll keep fighting till the very end!!

Sunday, 29 April 2012

I've not written a blog update for a while, so i guess i have lots to tell you!! I've been a busy little bee and today is probably first day i've had chance to write about my antics, plus its a horrible rainy day and i don't want to go anywhere!! For a change though this blog is exciting update of what i've been up too! :)

If we go back a few weekends with the CF Unit Campaign we had a Abba Night, we raised £1792 after we paid all costs out for the tribute group etc. It was a fabulous night! I had a brilliant time and for first time in a long time i danced all night and felt good! When i did sit down it was to talk to friends rather than because i couldn't breathe or was exhausted which was such an ace feeling after feeling so rubbish all last year, i could barely dance my way through one song.

I'm not biggest Abba fan, but everyone knows the songs and words, i have a couple of favourites!! Gimme Gimme Gimme, being the best Abba song in my opinion! x :) I'd been looking forward to this night since we started arranging it just cause it meant i could dress up! I loved my cute little 70's outfit i got off Ebay.

Even if i do say so myself i think i look pretty hot in this little outfit!! xxx hee hee!! Like i said it was a brilliant night, i don't know how i had time to dance with all the photos i took, i was like the paparazzi or a japaneze tourist!! lol xx I do love my camera though!! xx So here's my some more of my piccies!! xxx

Thats just a couple of my photos, the rest of them are all on my facebook profile if ya want a look!! xx

After an amazing weekend, my week didn't go quite as well, the people i love n care about were getting quite poorly, two people in particular i really care about. The weekend was really tough time because the boy who has been like a brother to me since i've known him since he was tiny has become quite poorly. So i spent the weekend up and down from the hospital visiting him, having little CF parties. Sometimes the whole cross infection thing has to go out the window, we grow up together so close and we all understand the risks and agree to see each other. This boy is a pure inspiration to me, having been told this could be the end, he has done everything in his power to keep fighting and is trying to get back on the transplant list so he can have a chance at a new life. I'm not religious in anyway, i believe in fait and i just hope its on the cards for Aaron to get his new lungs because i don't know what i'll do without him, he's amazing!!

There are two people, who i'm so close to who are really poorly n need new lungs, as much as a love n care for my facebook friends who have cf and need shiny new lungs no one comes closer than the people i've grown up with n care about so much. I've not seen Amy for a while as she lives in Leicester for now, but i actually met her in Mcdonalds last sat for half hour when she came down to visit Aaron. So glad i got to see her as something very exciting happen to her few days ago!

On a happier note last friday my beautiful friend Amy who has been waiting for just over 2 years on transplant list got her transplant on Friday 27th April, the operation went well and we all thought she'd be on critical care til monday or tuesday, instead 2 days later today been sunday, she's wide awake and off critical care and back on the ward. She's doing amazing and i'm so proud of her, obviously so thankful to the donar family, you saved my friends life and now hopefully she can have a new life and see her little 3year Annabella!

N just wanted to share this photo too, taken at Emma's 18th, 6/7 years ago! Amy wasn't there, but she got a little bored in hospital earlier this week and decided she wanted to be there, so sent me this photo! Yes that is me with blonde hair!! I look so much better with dark hair, less ill, n way prettier!! n then there's a baby aaron (so cute), birthday girl emma and my beautiful nat, who isn't with us anymore!! xxx my little CF family!! I love Amy's floating head!! :) xxxxxx

Then in last two weekend's i've had two Engagement parties! Yes i been out partying alot!! hee hee!! I feel like i'm 19 again, home at my parents and getting ready for nights out each weekend and getting daddy to drop us off! hee hee!

So first i went to Ames and Matt's party, me n Ames have been friends since we were 11, although we didn't really like each other till we 15. Then we went to college, uni together and she is a wicked friend, love her to pieces and so pleased than Matt is gonna make an honest woman of her next year!! xx

This night also gave me a chance to sort things out with a little lady who used to be one of my closest friends, we hadn't spoke to few years, long story! But we sorted things out, cleaned the slate and had a great night! Life is so too short! It's a big relief sorting things, means we all have an amazing time at hen do's, weddings and birthday parties instead of celebrating things separate.

It was also ace to see the lovely Nomie who is one of my closest friends from Uni, but she lives in leeds so i don't see her much! It's always so much fun spending time with her, as well as her hubby Paul, Katy, Joe n Kerry! x Had a really good night.

This week i've been a busy little bee! We were given the opportunity to do collections at our local theatre whilst the full monty has been on! So i have been collecting there on Tuesday, Thursday and Sat night and the Matinee!! I'm a very dedicated soul to the cause. We raised a fabulous 574.00 We are now in a position with the money raised from the Abba and Motown Night and my Calendar Sales to become a charity of our own! Which is really exciting stuff!!

As well as been at the theatre alot this week, i've also been to Manchester to stay the night at my lovely Sister in Law's Karen on Wed night, its kinda a little bonus to moving my care to Manchester, i get to see her more!! :) xx She ace, before she went to work she bought me a cuppa n some toast in bed!! Which i actually ate on floor, cuz didn't want get crumbs on the bed!! lol xxx ha ha!! I'm such a kind guest!! lol xxx

My clinic appointment, the appointment i've kind of been dreading! My diabetic appointment with Dr Rowe. I've kinda as usual been bit of a weird case, my body still making the insulin but i do have high sugars with breakfast and some meals at tea. I've been taking insulin just with my feed for years and been able to get away with not needing it with anything else. Now i'm on small dose with breakfast every day and i've got to test my sugars with meals to see which foods i'm going to need the insulin with.

My lung function is still holding it's own at 1.0 litre! N i still feel really well with my chest, so it's all good, but i've booked in for some ivs middle of may, in two weeks time pre the skydive and then i will of gone 11 weeks without IV's. That considering last year is so good, i'm so impressed with my lungs.

My weight has dropped a little without my feed and they said i could just do it a couple times a week to help give me a little boost, but i've said i don't want to do it till i go in for my ivs because i've been so much better and i don't know if its because i'm not having my feed or if its because of the meropenim nebs. When my consultant saw my sputum he said it was good because my sputum now looked like CF sputum and not milky feed. I can notice the difference on a daily basis, i don't feel clogged and i haven't felt like i'm drowning in sputum anymore! So when i'm in hospital i've agreed to try my feed, so it can get monitored properly. To see if the sputum changes and goes back to been thick horrid n milky!

Fingers crossed we'll get some answers, however they saying the answer might be having my feeds in the day, or after my tea, n that will affect my life alot more, i'm not sure i want that! I can't bolus it in because of the smell, i'd heave! So i need to use my pump! So who knows what we gonna do! I guess i just have to try things out n see what happens in a few weeks time. Until then hopefully the insulin will give me a little more energy n help my weight a bit too!! If not i'll just keep drinking lots more wine, like i did Sat night, thats high in calories and then i'll soon pile on the pounds!! lol xx

My second Engagement Party was for my bestest friend Stephanie, it was just casual drinks to celebrate at a pub in Newcastle. Love you Steph and so happy for you and Ben!! :) xxx

I think that you all updated now on me n my antics!! Yes i have been a little party animal lately!! but hey i'm well and my body letting me and i rest when i need to. It's all good!!

So next week i have the most exciting weekend of all planned!! I just can't wait, i'm so excited i could actually wee a little!! lol xx On thursday i'm going to london to meet Sophie Gannon!! Its gonna be the best bank holiday ever! We are going to Whipsnade Zoo on the friday, i have my ticket booked, so some nice weather please!! :) xx Soph adopted me a giraffe there for christmas so i'm gonna meet Savannah too!! Then saturday we have the FA cup final!! Soph is a massive Chelsea fan!! I'm driving down in my lovely little car, just me n open road. I was planning on stopping for lunch in Leicester on the way with Amy, but hey some people will do anything to get out of lunch, like have a transplant!! ha ha!!

When i get back you'll so get a blog update saying, me n soph did this, n me n soph did that. hee hee with lots n lots of photos of me n soph n giraffes!! Cuz they my fave animals in the world!! xxx

Well i've been on and off writing this blog all day! N i think i'm finally done!! Takes so long to upload the photos on here!

Friday, 6 April 2012

Well my dad's always said i only have two hobbies, shopping and spending money! This week i seemed to have done alot of that, i've shopped online and in the shops, i've spent money going out n having fun but i still feel empty! Yes i have 4 new pairs of ear-rings from New Look online, they were on buy one get one free, i also have a new pretty skirt and a cute turquioise satchel handbag. I also have some new jewellery from work, this cute silver leaf set, that i wanted for a while n a silver bracelet n a cute little frog to go with the new maxi dress i have for work, just it's in the hands of my mum at the moment because it needs 10 inches off the bottom! Fits me perfect on top part just way too long as usual for this little shortie!! But i do love me maxi dresses just need sunshine to come back so i can wear it for work. Although i have an engagement party to go on 21st so maybe i'll save it and wear it for that first then wear it after for work. I do love monsoon clothes when i like what i'm wearing, in the winter u just have to keep warm, but in summer, skirt n maxi dresses and i love them.

So i was gonna be so good this month, i had worked out all my money and budget £50 a week to treat myself with, i've not really had extra money to treat myself with for a while so i thought it was about time. My money budget run from Tues to Tues, i did well in my first week. Actually still had £15 in the purse saved from night out on the saturday. This week it all week out the window. My new look stuff cost £28, my Monsoon stuff cost £27 and then i went to Next and bought a top n a canvas for my room and spent £24. I'm sure u can do the maths thats nearly £80 in just a couple of days! So my bank account no longer looks good for the new few weeks and having shopped i have new pretty things and they make me happy but they don't fix what's going on inside.

On a good note, i think last few days my pain in little better, ive not been feeling painkillers wear off as much and not in much agony, its still there just not as painful. I had a tickly cough last few days - nearly passed out in boots choking on the smell of perfumes, i was coughing so much it was horrible, i just wanted some bloody foundation! Oh n that cost like £9 too, i nearly fell for the whole 3 for 2 thing, but would had to spend more to get summat for free, so i talked myself out of it. Just had the foundation. So next week i'm so not spending money! I just want so much right now, i want this denim little jacket from work, its gonna cost £20 and then there some cute shorts too, all good investiment purchases, will come in handy for a holdiay n summer in general in uk if we get one! That week a few weeks ago, was so lovely i was able show me lovely tan off wearing a white vest top n my new little skirt from kids section, this weeks ive needed to wear it with leggings n cardigan and it so doesn't feel as cute!! lol

I am glad i'm little most the time, i like been cute and wearing cute little outfits. I can't wait for the Abba night next week, i have my 70's outfit which is currently also in my mum's sewing pile, good job i have a mummy who can sew i'd be useless! The sewing genes didn't pass to me, my mum, nan and aunties can all sew, least i have lots of little helpers for my wardrobe. The Abba outfit just needs a little adjustment on the shoulders, prob not the simpliest of jobs though wit the big flary sleeves. I'm really excited bout wearing it though, i love dressing up, i'm not the biggest Abba fan, but i know all the songs and i'll be able to have a few drinks this time, i will so not be driving and i'll be off my antibiotics so it'll all be good. It should be a really good night, if only i could sell tickets, got given quite a few tickets to sell for it, which is hard work, i don't like asking people if they are coming to things to much, i've had enough of sending texts round and not getting a response, people can be so rude, i'd rather a sorry i don't to come than been ignored.

You know in life there are some people u can rely on been there to support you and others u just got no chance. Ive put my life and soul into fundraising and campaigning for the cf unit and all i want is a little support from the people around me, is that too much to ask. Ive been telling people about it for months, but i don't ever push people for an answer on the spot. I don't like to pressure people but i feel like my friends etc should want to come to support me. Is that wrong. I'll go anywhere, do anything i'm always up for doing things, having fun and supporting people as long as i'm well enough, but people don't do same for me, makes you wonder why i bother some times. In fact it makes me want to become a hard faced cowbag that just does what i want n not try to do what others want or try make other people happy anymore.

It's kinda like the sponsorship for my skydive, i don't have much spare money, but i always try to sponsor people around me and on facebook who are trying to do something good, although this month i did have a little extra, i don't have bills to pay anymore now i moved out of my house so decided to treat myself a little, nowt wrong with that, but normally, i'll go without something to be kind to others and sponsor them, complete strangers have been so kind to me and yet there are people who i would hope i wouldn't actually need to ask just don't say or do anything about it. i hate asking will u sponsor me? oh thanks how much? it just feels so rude! how else am i gonna raise money though, i probably do people's head in posting things on my facebook but it's the only way i can do it. i've hardly used a paper form because i just don't like asking people for money, i don't like asking people to sponsor me, buy raffle tickets or if they wanna come the abba night, because i know how precious people's money is to them.

I'm not in a great mood tonight, i kinda needed a rant, i don't mean to offend or upset people, i just needed to get things off my chest and this is my blog and what i use it for. Quite honestly, i'm tired n grumpy n miss my husband like crazy, i havent seen him for two weeks now, we're still friends and we text, guess we both been busy, but i just miss him. I'm used to seeing him everyday and not seeing him for so long i just miss his company. I know we're prob never getting back together but i want to be friends and i think as we've been living together for last year or so as friends that been friends now shouldnt be too hard! I think it's been part of the reason i've shopping this week, to try n ease the pain of not seeing him. I know i can see him if i want to it not that i can't, it's just i know he's busy and so i've tried to keep busy too. Prob why i'm worn out today n needed a lazy day.

So i think it's time for an early night after my very boring friday sat on the sofa, i've even been watching the golf with my bro, now i need to go drink lots of water and rehydrate myself, my mouth is so dry from been on three antibiotics and getting bad thrush on tongue so my nystatin is becoming my best friend and the boric acid second round of medication is about to come out the cupboard too! Don't ya just love thrush! For those of you on constant antibiotics u prob know exactly what i'm talking about. Great fun! xx Anyway bed time.

Tuesday, 3 April 2012

Blogging is definitely a huge way for me to release my feelings and stop me from bottling things up. I do think a lot, i guess a life with CF you always have a lot to think about.

I'm been in agony with my left side, which is my good lung, since a week last friday now! I know it's most probably a pulled muscle caused by my silly car handbrake not holding and me trying to pull it on extra notch n then twisting funny to get it off! Luckily the car is been fixed today but me n my side still in a lot of pain. I've been on got checked out, I drove to Manchester in the end last Thursday because a failed attempt to just get a Xray and a doctor to tell me my xray is fine and to just keep taking pain killers for a pulled muscle. But no it's not that simple, i waited 2 hours for x ray in the new A&E department at UHNS then to be told there was a hazy patch where i was complaining i had pain that wasn't on previous x ray in 2011. But he was only an A&E doctor and wanted a medical consultant to take a look, next thing they are wanting to swab me for MRSA, take bloods n admit me! I was like excuse me, if there is something wrong i'll go to manchester because i don't think any of them actually knew what to do with me!

I went Manchester, my xray was fine, in fact they said it looked slightly better than one i had when i was admitted in Feb. Most prob a pulled muscle or could be tiny crack in rib, i'm still in a lot of pain, n it hurts so much to cough so they put me on Cipro n Septrin to protect my lungs getting infected and given me anti inflammatory's and pain relief. But least i got checked out properly by people i trust, i don't think i'll be going to A&E again anytime soon, just felt a bit daft driving all way to Manchester to be told its a pulled muscle. Best to be safe than sorry though hey! As long as my left lung isn't joining my naughty right lung i don't mind. I would however really like this pain to go away soon, please!!

Not that i'm letting the pain stop me, i've still been to work, i just had an hour off to go to Manchester and i went bowling, but i didn't bowl i just watched my friends, i've never really been one for bowling but when your sitting there watching because u can't actually bowl all i wanted to do was pick up a ball n bowl it down the isle. I then went on night out Sat night with the lovely Ula, it was hard work, all i wanted to do was dance around like i did few weeks ago, i could dance a little whilst the pain killers were working but they wore off fast n it became very painful, yeah yeah i know, prob cuz i over did it, lol! It was the walk between pubs that then did me in! I always cough loads with change of atmosphere, so coughing loads, walking in cold and heels, n the pain in my side, midnight i was ready to go home. We had gone to walkabout too, not one of my fave bars it was so rammed n not the place for a newly single person to be, looking round all i wanted was my husband! So it was time to go home.

When i think about me n Steve i feel so sad, we were so happy and how it went so wrong. I miss him loads because he's my best friend, we still text and talk but i miss his cuddles. The thing i find the hardest to cope with is that he'd choose a life on his own in that house without me and lil soph rather than a life with us! I don't know how i'm ever supposed to deal with that, for me living on my own would be my worst nightmare, i'd be lonely which is why i'm glad i'm at home with my family and i've got my adorable pup who still cuddles me lots! :)

On a happier note i'm planning a little trip, to go and meet for the first time my amazing friend Sophie Gannon. Sophie is my very best facebook friend with CF and we always wanted to meet up, last Aug Sophie had a lung transplant, but whilst waiting she made a list of all the things she wanted to do when she got her shiny new lungs, "Meet Joey" was on her list!! So now we're both in a good place i'm so excited to finally make the trip to go and see her. For Christmas she bought me an amazing present and adopted me a Giraffe at a Zoo in London!! So i got two reasons to go to London to visit her now!!

It's 30 days n counting till i plan to go, just gotta change a shift at work, then all system go!! yay!!! Did i say i was excited, lol well i am!! Think we both had a rough few months so meeting up will be just what we need to cheer us both up!! Soph's gonna make me some of her famous cup cakes, i hope!! hee hee and we're going the zoo, n out for tea, shopping (we both love shopping), night out n then i'm gonna watch her beloved chelsea with her at the pub on the sunday!! We gonna have a proper itintery by time this month is over cuz we both want to do like everything xx :) We both snap happy with our cameras so i'm sure there will be lots of photos!! xxxx

So think that me updating u all, i got to be good and behave with my money and not shop online like i did this morning! I had no car and had an email about 20% off voucher code so i've ordered myself a new handbag, skirt and jewellry was on buy one get one free so i've had 4 pairs of ear rings xx hee hee xx If anyone else wants to be naughty though, i'll share voucher code xx hee hee!! New Look Code.
Don't spend too much, but hey it's worth it when u getting discount, n have it shipped to ur local store, then no postage!! Bargain!!

U know i would love to be a personal shopper, girl came in Monsoon yesterday with her nan, i imagined her to be a bit younger than me, she was looking a the kids party dress's and i knew she was looking for her, i didn't want her to feel uncomfortable so i told her i buy stuff from kids section all the time, luckily i was wearing my skirt i bought last week from kids section, its my smallest item yet, the aged 10-12 was was to big, its a turquoise high wasted skirt with a pretty pattern on it, quite grown up but it looks so cute on me, been wearing it with lil white vest top last week cuz it was like summer, yesterday it was cold n wore my navy leggings with it and it still looked very cute! Anyway i thought i'd bought next size down, i just tried it on and it fitted and paid for it, when i got home i actually realised it was aged 6-8!! I consider this a triumph, lol i am not tiny, kids r just getting bigger these days!! lol!

My plan was to make this girl feel more comfortable, let her know she not alone with been little n buying out the kids section cuz i live in new look kids section clothes, but i also wanted to help her get out of trying the kidified dress her nan was holding up for her, but my plan went pair shaped, i don't know what happened, i insulted her, she didn't act like i had but i knew i had cuz straight away i knew if someone had said that too me, been tiny too i wouldn't of been to happy, i asked her "if she was going to a prom" she said no my prom was years ago, im going to my friends wedding!! eeekkk!! I then quickly changed subject to ask if she knew someone who could sew, cuz if she gets a jersey maxi dress they so easy to cut n turn up, i say that like i do it myself, ha ha i don't i bring them home to my mummy, nan, auntie anyone who's free at time really, but mainly my mum!! Last night i landed my mum with 3 items for the sewing machine, will keep her busy for a bit and stop her falling sleep on sofa in evenings. My new maxi dress for work which is so pretty i love it, a dress that i got for a 5er last year that needs straps adjusting and my abba dress that need pulling up on the shoulders. I so excited about my Abba outfit for the CF fundraising night on 14th April, i have my outfit i got off ebay, i bought some white boots n last night i ordered some pink sparkly 70's ear rings, i was thinking bout a wig but i'd so have an itchy head so i'm giving the wig idea a miss!! u'll have to wait a few more weeks to see the pics!!

I'm hoping i can stay well for April, i have things going on and then going to see Soph at beginning of May, then after that i plan to have IV's it will be the longest i've gone without if i can make it and i'm really determined to look after myself, i have to have them in may before the skydive! So it'll be perfect timing to go in for a few days, so lungies if ur listening, that's my plan, don't u dare go n mess things up for me! I want to be well, so i guess i should do the nebs i been avoiding for last hour by writing this blog!!